Hi , I posted about 3 weeks ago saying I had a possible flare after reducing from 12.5 mg to 10 mg. I followed advice and increased to 12.5 mg but after 3 days with no improvement went up to 15mg my original dose as I was going on holiday in 4 days time with a 9 hour flight. I stayed on 15mg for the duration of my holiday. I experienced symptoms of weakness at times on holiday and some burning feeling in my shoulders despite trying not to overdo things. I was on a large cruise ship so there was a fair amount of walking around.
I came home Sunday and still feel very weak and my legs don’t want to work sometimes. My arms also feel weak. My energy is low. My question is, do I wait a few days to see if I improve or do I need to increase prednisolone for a short time? To be fair I don’t feel as bad as yesterday so think I’m getting over the 4 hour time difference. Thanks for your help
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Sheeplegs
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If it were me, I’d do absolutely nothing for this week and recover from the onslaught of stressors even if they were good ones or leading to good ones. You have improved a bit so more of the same. Long haul, low cabin pressure, extra activity, time changes, general excitement, carrying even light bags, sitting in the plane (gets me every time)etc etc.
Agree with SnazzyD give yourself time to recuperate from holiday.... as the old saying goes 'you sometimes need a holiday to get over your holiday' .. and yours does sound fairly full on.
Thank you. It’s still early days for me regarding PMR and I’m often surprised by how little is too much. I’ve planned a few days doing absolutely nothing so that should help.
Just been reading now. I’d read some of it before but not all. Very helpful, thank you. It’s something to keep revisiting I think as it tends to go out of my mind. I’d not read the Spoons before and found it really resonated with me . It was very moving as well, at least I’ve had many years of not having to count spoons unlike the author and many others like her. There’s always something to be grateful for.
Yes there is -and agree it doesn’t always resonate early days -too much info to take on board. But as you go along -it does (hopefully) make more sense.
I agree with Snazzy - nice though a holiday may be, it is still stress, and you tend to not notice or forget about all the things you did "extra". I find walking more than usual leaves my legs feeling weak for ages these days. And all those bags, even ones on wheels, not good for us at all!
There was a lot more walking even though I tried to keep it down. Nice to be away though. Thanks for the advice . This group has been such a help even in the short time I’ve had this condition. Thanks to all involved
We toddled around Rome a couple of years ago, just following our noses. At the end I felt too tired to go out to eat. My husband whipped out his phone and said we had covered 10km. Would never have guessed at the time. Being excited, interested and very distracted it was easy to not notice.
I would just reiterate the advice here re holidays. I’ve had several trips to Europe and a few weekends away since GCA diagnosis and I always have to take it easy beforehand and afterwards. All worth it to spend times with friends on holiday. Last week we went to a gig and my legs literally felt like they were ‘buzzing’ afterwards just due to the walk from the car park. I never alter pred, just rest up afterwards, basically alter the amount of activity done. So far, it’s always righted itself. Having said that, I never taper before or during a holiday.
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Tapering from pred
Tapering after a flare
Reoccurrence of symptoms
Stress over holiday- now flare up
